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Testimonials
 My Story by Jarrod L.
October 13, 2005
I am a high-energy kind of guy. I can never find enough hours in the day for everything life has to offer.
I've crammed a lot of living into my thirty-eight years, most of it in New York City where I was born and raised. I graduated from the Merchant Marine Academy and sailed the high seas for the next four years. For the following ten years I worked in the corporate office for a British shipping line located at the World Trade Center. During this time, I pursued my love for cooking attending night school at New York Culinary Institute. I eventually opened my own family restaurant, Nick's, in the Bronx with the assistance of my uncle.
About fifteen years ago my hands and feet started to go numb. I simply chalked it up to being connected to stress. Running your own business even when you're high energy can be nerve wracking. Was I sick? I didn't have time to be sick.
Nick's gave me a comfortable lifestyle. I owned my own home and was able to pursue my hobby of racing various cars and motorcycles.
The numbness in my extremities continued for the next six years but I just didn't have time to focus on it. Due to a dispute occurring at Nick's, I finally decided it would be best for all if I sold the restaurant.
I decided a new career was in order. I trained to become an ultra-sound technician. I did well in my studies and landed a job at a hospital in Delaware. I was working steadily for a few months when I was reassigned to a hospital in southern Delaware.
The numbness in my extremities started increasing. I realized it was time to have a physician exam the situation. Since I was working in a hospital, it was easy enough to schedule an MRI. I was diagnosed with Multiple Sclerosis (MS). I was blown away by the diagnosis. My life from one day to the next changed dramatically.
The hospital I was working for found out about my diagnosis. Their decision was to terminate my employment. They felt I was now a liability because ultra-sound is heavily dependent on hand eye coordination.
I was left with no job and no health care benefits because I had only been employed a few months. I was extremely upset with the decision I received from the hospital. I personally believed I wasn't incapacitated in any way and could fulfill the expectations of my job I was brought down to Delaware to perform.
With no income and future employment a big question mark, I decided to apply for Social Security Disability Income (SSDI). I assumed I would also be eligible for SSI but was told I had too much money and property to qualify. I did find out I would be eligible for Medicare, but not for two years.
As time went by, I was forced to deal with the federal bureaucracy. There was so much to learn about SSI and SSDI, it was confusing and lacked any type of logical systematic approach.
Here is some of the questions I needed answered immediately: Did I have to be penalized for having money set aside and a home? Do I have to be destitute in order to get help with my exorbitant medical bills? I have a very serious illness now, why do I have to wait two years to qualify for Medicare? Why are the regulations concerning the amount of money you can make at a job while receiving SSDI so inflexible? No two people are in the same circumstance but that is never given any consideration.
Dealing with the federal bureaucracy on a regular basis is exhausting and demoralizing. Is that part of the system too?
Prior to this point in my life, I was always able to take life's obstacles in stride. Now too much was happening all at once and none of it good. I was in a very dark place for a while.
I researched all the facets of MS, mentally and physically, which lead me to contacting the Multiple Sclerosis Society. As it turned out it was the best place to start. Joining the local chapter of the MS Society saved me from giving up altogether.
MS is an unpredictable disease. Meeting people who have endured this disease helps me prepare for whatever the future holds. The friends I have made at the MS Society have been a God sent. Their support for me during these rough times since my diagnosis has been absolutely incredible.
At one of our monthly MS meetings, I was introduced to Cathy, the Executive Director of the Freedom Center for Independent Living (FCIL). She explained what the FCIL was all about and thought she and her staff could help me sort out my benefits eligibility.
My specific situation is not typical of most consumers the Center has worked with in the past. I had money in the bank and I owned property. Still, I needed to be employed; not only for the income, but also to feel I am a productive member of the working community.
Cathy, at the Freedom Center, offered me the position of peer support. She told me the independent living philosophy of the Center was best exhibited in people with disabilities working with other people with disabilities, in peer support. She also told me she thought I would be very good with young people because my enthusiasm for life was contagious.
I started working at the FCIL in Middletown on August 15, 2005. It's been only two month's part time but I feel like I've been able to accomplish so much. I've met with several consumers. It is making a difference when I share my experiences and trials with other consumers about negotiation with the federal government, money issues and then dealing with a serious health condition.
Along with peer support, I've also been involved in the Center's outreach to the business community. There are many small businesses in the area that have no experience in hiring or working with people with disabilities. FCIL is doing something about that by offering training programs to help businesses learn more about people with disabilities, and about the American with Disabilities Act. People with disabilities want nothing more than the opportunity to use their skills in an employment opportunity. We prove over and over that hiring us is a sound business investment. FCIL is out to help local businesses appreciate that fact.
Another project FCIL-DE has put me in charge of is to make sure the parks and recreation areas in the community are accessible, and if not, I am to work with officials on plans to make sure that they become accessible.
It's been difficult to except my disability at this point in time. MS definitely changed my life. I have to give myself a daily injection that I will never get used to because I have an aversion to needles. Some of the medications have been worse than the disease. But I refuse to give in to this disease. My doctor tells me to take it easy, get plenty of rest etc. but I figure I'll have plenty of time for that when I get old.
For me, activity is the best therapy. I still cannot find enough hours in a day to experience everything life has to offer. I love to swim. I ride horses at a facility that specializes in providing riding therapy for people with disabilities. I get together with friends here in Delaware and travel to New York to visit my life long friends and family. And now I have a job thanks to the Freedom Center For Independent Living.
FCIL has broadened my horizons. I would really like to go back to school to become a health care provider not just a technician. In the meantime, I am enjoying my work at FCIL and my life.
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Freedom Center for Independent Living
400 North Broad Street, Middletown, DE 19709 (302) 376-4399 1-866-OUR-FCIL
TTY: (302) 376-4397 FAX: (302) 376-4395 E-MAIL: info@fcilde.org |
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